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August 27, 2018 - Survivor profile: Dani Stafford Lorson celebrates life and love after leukemia
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#WhereIFindHope

"Friends, family and my doctor who showed me I have a beautiful life ahead to fight for."

MOBILE, Alabama -- Dani Stafford started dancing when she was three. By the time she was seven, she knew she loved it. By the time she was 15, she says, “I realized it was a passion — not just an extracurricular activity, but something that filled my heart.”

She pursued it with passion — studying at Sheffield School of the Dance after school at McGill-Toolen, graduating from the University of Alabama with a dance degree and hitting the audition circuit.

And unlike most teen dancers, Dani landed a professional gig.

Well, teaching the electric slide at the Wild Horse in Nashville may not be a dream job, she confesses with a grin, but it was honest work. From there she moved up to Veggie Tales, touring from church to church.

And then came the big time — a chance to dance alongside Big Bird in Sesame Street Live. “It was so cool,” she recalls.

It was gratifying to be the lead dancer, she recalls, but it was exhausting. After six months on tour, instead of getting easier, it seemed to be getting more exhausting. Often, by show’s end, she’d feel short of breath, ready for a nap.

Her friends kept telling her it was understandable — dancing the lead is always exhausting. And besides, when you get only 24 hours off in a week, who wants to spend it at the doctor’s office?

But finally the show paused for a month in Detroit, and she took the opportunity to visit a nearby urgent care. She figured it was something minor, and at first glance, the urgent care folks couldn’t find an explanation either.

But they called her two days later, asking her to come in that very day. It was a two-show day, she recalls, and all she wanted was her between-shows nap.

She recalls everything about that day. From the scent of the orange she was snacking on to the solicitous looks on faces of the staff.

“I think you have leukemia,” the woman said, handing her a box of tissues.

“But why?” Dani questioned. “I’m healthy. I work out for a living. My body is my instrument. I’ve always tried to take care of it.”

“You have cancer” are the three words you never expect to hear, Dani says. “But cancer doesn’t discriminate. It doesn’t always matter that you’re doing what you should to take care of yourself.”

Two boxes of tissue later, she pulled herself together enough to follow the first advice — “Call your mom.”

She didn’t want to burden her mom.  When the diagnosis came in 2015, it was barely more than a year since her dad’s death. “My mom’s world has just been rocked already.  How do I crush her heart again?”

The physician assistant warned her to make sure her mom was sitting down — such a cliché it was even amusing in the moment — but she realized the truth of it. What if her mom had been driving? In the end, Dani couldn’t speak the words, afraid her mom would hear fear in her voice, so she turned the phone over to the expert.

Next, she realized she would have to quit the job she had scrambled so hard for. “I was getting paid to do what I love, to travel and to hang out with awesome people. All the hard work finally felt worth it, and now I’m having to say goodbye.”

She especially regretted leaving behind the friends she’d made on the tour. It turns out that wasn’t entirely true, but more about that later.

Her mother and a couple of close friends scrambled for a flight, flew up to be by her side for the week they had to wait for a confirmation of the diagnosis — hoping against hope it was wrong.

Throughout the week she reminded herself: “This is a diagnosis from a physician assistant in an urgent care — maybe, just maybe, it’s wrong.”

But it wasn’t. A hematologist in Detroit confirmed it and made arrangements for Dani to return to Mobile, setting up immediate appointments with two local cancer specialists.

 

Back in Mobile

After meeting Dr. Thomas Butler at MCI, Dani skipped the second appointment.

He confirmed the diagnosis as acute lymphoblastic leukemia, and together they opted for the juvenile treatment protocol.

It’s a protocol so intense that patients require 40 days in the hospital with constant vigilance.

“I was still grieving my job rather than worrying about the treatment,” she recalls.

“I think back now, and I wonder how I lived in the hospital for that long,” she says, recalling chemo two or three times a week, and lumbar punctures to monitor any spread to her brain. 

 “My mother slept on a blow-up air mattress on the floor of my hospital room for 40 days,” Dani says. “She gave up her life to save mine.”

Friends helped, too, with a slumber party or endless Saturday evenings of board games. They were a godsend, she says. “I didn’t want to be by myself.  I wanted somebody by my side, holding my hand.  

“At the hospital, you have to leave all your dignity at the door,” she says. Yet she feels like the nurses — whose names she can still recite three years later — were friends. “It takes a special person to make you feel like you’re being taken care of by friends — like you have a life, even though you’re in the hospital.” 

When she rang the bell, signaling graduation from cancer care, those nurses were on hand.

“God put them on this earth to do that profession,” she says.

After the hospital ordeal ended, her care moved to MCI.

“It’s another place that you dread walking in,” she says, “but they make a horrible situation not so bad. You might walk in with dread, but once you get there, you see these smiling, friendly faces that lift your spirit. Sometimes it’s OK to go back the next day because you see people you’re glad to see. They have such a heart for their patients.”

When she graduated to a less rigorous protocol, she worried that she wasn’t snapping back quickly enough.  After all, she was now taking pills at home and having spinal taps only every other week. Why wasn’t she all better?

“Dr. Butler kept reassuring me,” she says.

But, in fact, she did start having an occasional good hour. She and her mom might go to the mall, even if she strolled the halls in a wheelchair. Or they’d have a picnic.

She began to recognize lessons she had learned from her dad, when he was ill — that it’s important to do all the living you can, even if there’s only one good hour at a time.

“He was sick but lived with a good attitude,” she says, and she didn’t realize till later that she “was learning how to handle a disease with grace and a strong positive attitude. I didn’t handle it near as well as he would,” she adds, “but that’s what I’d work toward.”

 

Old show ties

Back there on the road with Sesame Street Live, Dani had enjoyed meeting her roommate’s brother — a nice guy named Sean Lorson. She was kind of surprised when he came to see the show a second time, joking that nobody his age is that fond of Elmo.

But she was even more surprised when he texted that he was going to be in Mobile briefly. Her mom agreed to put him up for the night. A few months later, he asked whether he might visit again. Sure, she told him, warning that she might not feel up to much during his visit.

“Miraculously,” she says, she had not just a couple of good hours but a couple of good days.

For Christmas of 2015, he gave her a plane ticket to South Carolina, where he lived and worked as a nuclear engineer. Masked and gloved against infection that might overwhelm her endangered immune system, she made the trip. They vowed to see each other at least every month.

“He was such a great support system,” she says. “What I appreciated so much is that he had a choice. We weren’t dating when I got my diagnosis. He had a choice to be in my life or be distant. He jumped in head first, when some people I was much closer to walked away.”

“He helped give me hope,” she says. “In the beginning, I was fighting because I knew how hard it would be on my family if I lost my battle with cancer. 

“Once he came around, it gave me a sense of hope, because it showed me what I had to live for.”

Sean proposed at the Fairhope Pier — the same place Dani’s dad proposed to her mom. Sean hired a trolley to bring everyone from her mom to Dr. Butler along to witness the event.

Sean and Dani were married May 26 at St. Lawrence Catholic Church in Fairhope. Now they’re off to Corvallis, Oregon, where Sean has a new job and Dani hopes to find a way to use her experience to help others.

The wedding itself was designed as a celebration of life.

“We’re celebrating not only Sean and me, but also thanking all the people in that room that are the reason we get to spend the rest of our lives together.”

Ask your physician for a referral to USA Health Mitchell Cancer Institute or call for an appointment at 251-410-HOPE. 

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